Synopsis and Key Points:

Main Digest

Today marks the inaugural International Batten Disease Awareness Day. Themed "Come Together," this important milestone aims to leverage the global reach of social media to unite members of the Batten disease community, while building awareness of this disease and the need for research.

Batten disease, or Neuronal Ceroid Lipofuscinosis (NCL), is an inherited disorder of the nervous system that typically begins in childhood. To date, there are 13 genes that have been linked to the different forms of NCL (1).

There are four primary types of Batten disease with the first symptoms presenting anywhere between 6 months to 15 years of age, depending on the child. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease will experience blindness and dementia. Batten disease is often fatal by the late teens or twenties, and in some forms it can be fatal between the ages of 8-12 (1,2).

Show Your Support

Participants in International Batten Disease Awareness Day are asked to show their support in several ways including:

Liking the campaign's Facebook page @InternationalBattenDay

Joining the #BattenDay2018 Twibbon campaign

Utilizing the Facebook profile frame

Participating in an art project called #MakeYourMark where participants are asked to share thumbprint art on social media to create a tangible and creative representation of the prevalence of Batten Disease and NCL around the world.

"Due to its rarity, unless you know someone with a connection to Batten, you will never hear about it. However, by bringing the international community together, we hope to raise awareness of this devastating disease which translates to earlier diagnosis and intervention," said Margie Frazier, Executive Director, Batten Disease Support and Research Association.

"Today marks beginning of an inspiring tradition that will amplify the voice of the NCL community, honour the lives of those that have been impacted, and drive donations to support research," said Samantha Barber, Chief Executive, Batten Disease Family Association.

Batten Disease Support and Research Association

The Batten Disease Support and Research Association (BDSRA) is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action.

Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America.

BDSRA believes that to effectively unravel the mysteries of Batten disease, medical scientists, researchers, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.

Batten Disease Family Association

The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease across the UK.

Our mission is to enable everyone who is affected by Batten disease to live life to the fullest and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.

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